2023 Early Hearing Detection & Intervention Conference

March 5-7, 2023 • Cincinnati, OH


3/14/2022  |   1:15 PM - 1:45 PM   |  Family Leadership Resources and Opportunities within the Genetics Network   |  Room 3

Family Leadership Resources and Opportunities within the Genetics Network

The National Genetics Education and Family Support Center (Family Center), National Coordinating Center (NCC) and the seven Regional Genetics Networks (RGNs) work together efforts to improve the health of medically underserved by promoting the translation of genetic medicine into public health and health care services. Each RGN is composed of up to eight states and territories and are a central component of the U.S. genetic services system of healthcare providers, public health professionals, and family representatives. They are supported in their work through cooperative agreements with the MCHB/HRSA, Genetic Services Branch (GSB). The Family Center encourages patient-centered outcomes by supporting individuals and families with genetic conditions to better engage with healthcare services by: • Conducting staff and family trainings • Identifying, promoting and maintaining online resources • Providing technical assistance and leadership opportunities to the RGNs and NCC • Supporting the collaboration between family-led organizations, the NCC, RGNs, and the Family Center The NCC supports activities of the seven RGNs by providing infrastructure, coordination, technical assistance and resources necessary to address issues of universal importance, thereby avoiding duplication of efforts and allowing the regions to focus on their unique areas of need. The goal of the seven RGN programs is to improve health equity and health outcomes in individuals with genetic conditions and to improve the quality of coordinated and comprehensive services to children with such conditions and their families by supporting an infrastructure to improve access to genetic services, providing training and education to health care professionals, and supporting families. This session will provide information on the Family Center, RGNs, and NCC and how they interact to create a system of care in the Genetics Health Care Delivery System along with resources and trainings that have been created to assist family leaders in leadership development and opportunities for involvement.

  • Participants will learn how the Family Center, NCC, and RGNs interact to create a system of care in the Genetics Health Care Delivery System.
  • Participants will learn how to connect with the Family Center, NCC, and their RGN for involvement opportunities within the system.
  • Participants will learn about leadership development resources for family leaders.


Handout is not Available

CART transcripts are NOT YET available, but will be posted shortly after the conference


Molly Martzke (InPerson), Expecting Health, mmartzke@expectinghealth.org;
Molly Martzke brings passion and real-life experience to her role with the National Genetics Education and Family Support Center where she serves as the Senior Program Manager. Molly has extensive experience working with diverse groups from local to international in providing family leadership training. She has dedicated her life’s work to improving the experiences and outcomes of all families with children with special healthcare needs. Molly is committed to actively engaging families as equal partners in their child’s health care and ensuring that the family voice is represented throughout the family’s journey and within their system of care. She believes that this change happens at the system level when there is diverse representation and honest dialogue amongst all parties.


Financial -
No relevant financial relationship exist.

Nonfinancial -
No relevant nonfinancial relationship exist.